I can't believe that tomorrow is Sophie's 5th round of Remicade. I'm pretty sure I haven't blogged about Sophie since . . . .The Shit that is Crohn's. If you haven't read that one. Do it. I just read it again and it made me cry. I hate to cry alone.
As you can see from the above pictures Sophie is a little trooper when it comes to infusion day. She doesn't like getting the IV inserted (who does?) but the nurses and child life specialist help keep her distracted during insertion. It takes about 4 hours and she usually plays Wii, watches movies, plays with the iPad and sometimes sleeps. They still give her Tylenol and Benedryl before the infusion to counteract any reaction she might have. Those 2 combined are enough to knock me on my behind!
All in all the Remicade is helping Sophie with her Crohn's symptoms. It was truly a miracle how quickly it began to work in the hospital. Amazing. She improved within a day.
She has completely normal poops now and has also stopped bleeding. Her labs have been slower to improve which is frustrating. Her hemoglobin continues to stay a bit low and her inflammation although improved is still a bit concerning. We tried to go 7 weeks between infusions and that didn't work so we are going to stick with 6 and see how that goes this time. The problem that we have now is she has terrible stomach pain. Her gut just hurts. A lot. We started a new medication (took her off of Nexium) called Cyproheptadine (4 MG). She has been on it for about 4 weeks -- it's supposed to help with the pain but I haven't seen a huge improvement but I'm willing to give it a little bit more time. She can't do anything for a long period of time. If we swim, she will swim for a bit but them wants to go inside and get in bed. It's the same story for just about any activity that we try to do. She just doesn't feel great and it hurts this momma's heart.
I'm looking forward to meeting with her doctor tomorrow to get her thoughts on the continued belly pain. They always do a blood draw so I'm going to ask them to run another Celiac screening just to rule that out. Otherwise I'm at a loss.
All in all she is SO much better but just not quite 100% yet. With each day we continue to have hope that the next process will improve her quality of life. Forever Hopeful.
Keep calm and Hope on . . .
oh man Laura, she is definitely one tough cookie. I hope there are answers and more helpful treatments soon for her. She looks great in the pics, but you truly know a kid is feeling cruddy if they'd rather lay in bed than play. I think of her often as my friend who has crohns post on FB frequently about his incredible journey and current situation, he is doing amazing, but man i remember the tough times, too. ((HUGS)) and she is in my prayers daily. Take care.
Sometimes celiac blood test is negative but there's celiac desease anyway. She should do a biopsy (it doesn't hurt, she sleeps) or try to go for a full gluten free diet for a few months and see.
Sometimes there's no celiac but gluten sensitivity, I think one has to try and see.
Be strong, a father of 4 years daughter type 1 and celiac ;-)
You have such a beautiful, brave little girl! My 9 year old son was diagnosed with Crohn's last week, it is all so very new to us..I've cried alot of tears of fear, and sadness, but I am determined to find out as much as I can to help my son.
Following your blog, hope your little girl is feeling better xo Michelle
Laura!! I've been trying to "find" you for hours!!! I started reading your blog because I was interested in putting 2 of my 3 t1 sons on the omnipod! Since your son is so little, I was wondering about how much insulin you go through having to change the pod out so often. This is my only concern with the pod. You can find me on FB under Julie Jenks or e mail me at email@example.com
ANY input you have would be AWESOME!!! My profile on FB has the picture of a guy(my husband)shooting an AR-15. He is a competitive shooter.
Cute baby. Sweet Sophie girl always makes me smile -- she deals with so much, yet always manages to flash that magical smile, even when she feels like garbage...praying for an answer to her pain, and continued healing to every square inch inside her body. https://www.carlmontpharmacy.com/fluorouracil.html
Just a Mom
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I AM my son's pancreas.
The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.
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